Join Oscar’s Village & Support His BIG Move (AFM)

As many of you know, in September 2018, just two weeks after Oscar’s first birthday, he was rushed to the hospital in the middle of the night, and wouldn’t make his way home for another 7 months. He spent a month in intensive care, undergoing numerous surgeries (emergency spinal cord, tracheostomy, gastrointestinal) and tests (MRI, CTE, spinal taps). Following some seriously close calls and 4 weeks of sleepless nights in the PICU, Oscar was moved to Blythedale Children’s Hospital in Westchester, a specialized pediatric rehab facility which was the family’s only option in the state of New York for Oscar and his condition. Eventually, Oscar was diagnosed with acute flaccid myelitis (AFM), a rare polio- like condition that has only a few hundred new cases detected each year.

Oscar spent 6 months in-patient at Blythedale (where Mom (Alex) and Dad (Nick) would take turns sleeping alone on the single couch each night in his hospital room), until finally they were able to bring him “home” to their new apartment in White Plains where they relocated. Oscar remains mostly paralyzed from the neck down, and is still fully ventilator and g-tube (aka feeding tube) dependent. Oscar’s condition requires around the clock care from skilled nurses, and, of course, Mom & Dad.

One year ago, Oscar’s Village was formed to provide support to Oscar’s family as they navigate their new reality. Immediately following Oscar’s diagnosis, Mom & Dad put their careers on hold; after a few months Alex returned to part-time work while Nick remains at home as Oscar’s full- time caregiver. With the incredible outpouring of support from the first crowd fund, they were able to move into a modern wheelchair-accessible building, with an additional guest bedroom for constant family supporters, and enough space for 24//7 in home nurses, therapists, and Oscar’s ongoing supply of medical equipment. They were also able to buy a handicap accessible minivan, and other needs they thought they would never had to consider. While they have faced every worry imaginable (and many unimaginable), every ounce of your support was felt, needed, appreciated, and put to good use.

After a year of feeling displaced, and both of their families flying in and out from Minnesota and Canada to provide necessary additional care and support, Alex & Nick have decided to move to Vancouver, where Alex is from, to finally be close to immediate family and friends. Although this move comes with an exhale of relief in many regards, the transition will bring some immediate challenges.

In Canada, the Little Lion will still require 24/7 skilled medical care, the costs of which will become considerable in the short-term while his family relocates. Everything from last minute flights, special travel insurance and travel nurses to out-of-pocket nursing, therapies and additional medical equipment are required for this transition to be successful, the expense of which is tremendous.

Throughout his ordeal, the little wonder has kept his cheerful spirit and mischievous attitude. He often wakes up singing, teases his nurses (“Oh Lord”), encourages his therapists (“Let’s do it!”) and himself afterwards (“Good job, Oscar”), and negotiates with Mom & Dad for five bedtime stories (never getting more than two). Recently Oscar has learned to use his head to paint, play the xylophone and tambourine, and control a switch that operates electronics such as a remote controlled car, bubble machine and special apps on his iPad. Most impressively, he’s the youngest child his rehab hospital has tried in a head controlled power wheel chair and he’s excelled— such a proud sight for his parents to witness as he works to regain some independence.

Despite the incredible effort and undertaking during Oscar’s first year of healing, his family is just beginning a life long journey of care. Alex & Nick have been humbled by the outpouring of love from their family and friends and welcome any new members to Oscar's Village.